[boann]

is anyone a member of this site, and, if so, are you aware that it is a for-profit site?

thanks,
Boann

[Jomar]

The info -

[The Company

PatientsLikeMe Inc. is a privately funded for-profit company tasked with making the PatientsLikeMe vision a reality. Our goal is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, we've created a platform for collecting and sharing real world, outcome-based patient data (patientslikeme.com) and are establishing data-sharing partnerships with doctors, pharmaceuticals, medical device companies and non-profits. Contact us if you're interested in working together to achieve our goals.

Founded in 2004 by three MIT engineers whose collective experience spans from running the world's only non-profit biotechnology laboratory to large-scale online commerce applications.

Our operating costs will be covered by partnerships with healthcare providers that use anonymized data from and permission-based access to the PatientsLikeMe community to drive treatment research and improve medical care. We only share anonymized data with trusted partners and all our patient information is kept safe and secure. For more information, read our privacy policy.]

http://www.patientslikeme.com/about/who

[boann]

from that text that this is a for profit company? because it is.

[Jomar]

Yes, I looked it up and posted so it was here for any that are concerned.

[PatientsLikeMe Inc. is a privately funded for-profit company]

[boann]

i missed that "for profit" bit because it wasn't there the last time i looked at the 'about us" section of PLM.

also want to make sure anyone who is a member or is considering becoming a member is aware that the data being solicited on the site is not only being shared with other pwp, it is being sold to other interested parties - i.e., it isnt exactly a case of operating costs being covered by partnership agreements.

[olsen]

the founders of the site are very up front about the "for profit" aspect of the site. Paul Wicks, a researcher in ALS, is one of the individuals who maintains the site, and from my experience with him on the old BT-ALS site (which was not for profit), he was helpful and available to the forum members.

In addition, this site is conducting a survey of all ALS and PD patients to determine if statins are associated with either of these neurodegenerative diseases. (I am uncertain if alzheimer's patients are included yet) which begins to address my primary interest, therefore,

I am a member-- I am very interested in their approach to neurodegenerative diseases. Given my feeling that there must be a partnership with physicians, researchers, medical academic institutions, pharmaceutical entities, not for profit groups, for profit groups and patients to discover effective treatment for diseases, I am not adverse to selectively lending my support:

the following is from the introduction to the site.

"PatientsLikeMe is committed to providing a better, more effective way to capture valuable results and share them with patients, healthcare professionals, and industry organizations that are trying to treat the disease.

--------------------------------------------------------------------------------
About PatientsLikeMe
Founded in 2004 by three MIT engineers whose collective experience spans from running the world's only non-profit biotechnology laboratory to large-scale online commerce applications, PatientsLikeMe is a privately funded company dedicated to making a difference in the lives of patients diagnosed with life-changing diseases. Our personal experiences with ALS (Lou Gehrig's disease) inspired us to create a community of patients, doctors, and organizations that inspires, informs, and empowers individuals. We're committed to providing patients with access to the tools, information, and experiences that they need to take control of their disease.

In 1998, a young carpenter named Stephen Heywood was diagnosed with ALS. The Heywood family began taking charge of Stephen's care, searching the world over for ideas that would extend his life and improve the way he lived. This set in motion a series of events that have led to PatientsLikeMe, a new system of medicine by patients for patients. We're here to give patients the power to control their disease and to share what they learn with others. We're here to help you.

Our goal is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, we've created a platform for collecting and sharing real world, outcome-based patient data (patientslikeme.com) and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits. Contact us if you're interested in working together to achieve our goals.

Our operating costs will be covered by partnerships with healthcare providers that use anonymized data from and permission-based access to the PatientsLikeMe community to drive treatment research and improve medical care. We only share anonymized data with trusted partners and all our patient information is kept safe and secure. For more information, read our privacy policy."


My prescription medication information is automatically shared with pharmceutical entities whenever I have a prescription filled--yes, anonymously, but the info is shared. Known as "tracking" for the pharm cos . So is everyone else's.

If anyone is interested in joining the group, may I make a plea for participation in the survey regarding statins and neurodegenerative diseases? madelyn

[reverett123]

I thought it was clear that it was a for profit venture. One of the reasons I joined was the fact that they had attracted investors who presumably had vetted their plans. They also share the info with their members too.

[Paul Wicks]

Hi there Boann, yes we are a for-profit company. That means that rather than having to get grant funding or beg or borrow people's time, we're able to hire a professional staff, sponsor activities in the community, and act in a rapid and responsive fashion.

Two of the founders are Ben & Jamie Heywood, whose brother Stephen had ALS. Jamie runs the largest non-profit laboratory in the world, ALSTDI, and so is well versed on the trials and tribulations of running a non-profit as well as a for-profit. I like to think of us as a "not-just-for-profit" but if that's got the more sceptical readers sticking their fingers down their throats, so be it

We do feed back the information we collect straight to PWP; you can look up all sorts on info on our answer network for instance. Whenever we carry out a survey (the statins survey is our first in PD but I have plenty planned as I am also funded by the PD Society to do research into mood and emotion), as soon as we have carried out the analysis we feed back the results to the whole community.

If you have any other questions feel free to get in touch at pwicks@patientslikeme.com.

All the best

Paul Wicks
Resident Researcher
PatientsLikeMe.com

[boann]

i am reassured that folks are aware of all they should be aware of regarding patientslikeme. it wasn't immediately apparent to me, you see.

thanks again!

[Paul Wicks]

No problem; just to be on the safe side we double-checked, and our policy has always stated up front that we're a for-profit company. May have just slipped under the radar first time round